Information for patients

What is CFS/ME?

Chronic fatigue syndrome/ Myalgic Encephalomyelitis (CFS/ME) is characterised by persistent fatigue that affects everyday life and doesn’t go away with sleep or rest. It is unlike everyday fatigue and can be triggered by minimal activity. CFS/ME is recognised as a relatively common illness (NICE, 2007) and is classed as a neurological illness by the World Health Organization (WHO, 2010).

Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. The range of symptoms associated with CFS/ME is huge and crosses traditional physical and psychiatric boundaries often resulting in patients struggling to obtain recognition and understanding (Davidson, 2005) not only from health professionals but family and friends.

 

Who is affected?

Overall, evidence suggests a population prevalence of at least 0.2–0.4%. This means that a general practice with 10,000 patients is likely to include up to 40 people with CFS/ME; it is estimated that around 250,000 people in the UK have CFS/ME.

Anyone can get CFS/ME, although it is more common in women than in men. It usually develops in the early 20s to mid-40s.

 

Causes of CFS/ME

It is not known exactly what causes CFS/ME. Various theories have been suggested, including:

  • a viral infection
  • problems with the immune system
  • an imbalance of hormones
  • Significant life event, such as stress and emotional trauma

More research is needed to confirm exactly what causes the condition.

How it is diagnosed?

A diagnosis should be made after other possible conditions have been excluded and the symptoms have persisted for four months in an adult. At the very least a doctor would have conducted numerous blood tests to rule out other illnesses and conditions that can cause fatigue.

There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of CFS/ME. NICE says that a diagnosis of CFS/ME should be considered if you meet specific criteria regarding your fatigue, for example, it can’t be explained by other conditions and if you have other symptoms too, such as sleeping problems or problems thinking and concentrating.

How it is treated?

There is no known pharmacological treatment or cure for CFS/ME which means that there is no medication that will make you better. Thus the treatment aims to reduce and in some cases eliminate all the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.
Some of the main elements of treatment include:

  • cognitive behavioural therapy (CBT)
  • a structured exercise programme called graded exercise therapy
  • medication to control pain, nausea and sleeping problems
  • activity management
  • pacing
  • purposeful rest and relaxation

M.E

CFS/ME is a complex condition with a wide range of symptoms that includes the following

  • difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle
  • muscle and/or joint pain that can be anywhere in the body and the area is not inflamed
  • headaches
  • painful lymph nodes i.e. in the arm pit, groin and/or side of neck
  • sore throat
  • cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
  • physical or mental exertion makes symptoms worse
  • general malaise or ‘flu-like’ symptoms
  • dizziness and/or nausea
  • Palpitations but no evidence of heart problems

A person’s symptoms may vary in intensity and severity, and not every patient will have all the above symptoms. Most cases of CFS/ME are mild or moderate, but up to one in four people with CFS/ME have severe symptoms.
The symptoms are classified as follows:

Mild: you are able to care for yourself, but may need days off work to rest.

Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon.

Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating.

Useful links

Central Lancs CFS/ME Support Group
01772 751254  College of Occupational Therapists
020 7357 6480 Help Direct
030 333 1111   Disability and Carers Service
0800 88 22 00

More detailed information can be obtained via the following links:
www.nhs.uk
NICE guidelines – CFS/ME treatment

References: Davidson, J. (2005). Contesting stigma and contested emotions: Personal experience and public perception of specific phobias. Social Science & Medicine, 61 (10), 2155-2164.